Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life

Thursday, May 19, 2016

Groan – another complication

Just when I thought the end was in sight of all the tests and specialists visits to try to be listed for transplant (at least for this year); we’ve hit another bump in the road. Thankfully, I am doing very well right now. Sadly, the complications are dental in nature.

I hate the dentist. I’d rather have a lung lavage, or even a heart cath, than have dental work. I think it is because for those procedures they give you wonderful drugs. At the dentist, you get a shot which might mitigate some of the pain, but you are still aware of everything going on. You hear the drills. You smell the odors. You have to lie back in the chair (even if they don’t put it back all the way). I breathe better sitting up generally. I always seem to have sinus drainage that sticks in my throat. When they are working on my teeth, I feel like I can’t swallow and all that goo is choking me. Add to this some negative experiences at the dentist, and my anxiety about dentistry is sky high!

My bleeding incident in February is making me even more nervous this time. It has taken me a good three months of very constant and very hard work to recover from that, and I’m exceptionally lucky I have recovered as much as I have.

Finances are another issue. I will max out my dental coverage before I get everything completed, so this is going to cost several thousand dollars. Thankfully, this is what my lung transplant fund is for, but I worry about what I’m going to live on when I can’t do the things I am doing now to earn extra money. My disability check covers my rent, and maybe a utility or two, depending on the time of year. So, even though I’m on disability, I still have to come up with some supplementary income to pay the basic bills. (Especially here – the cost of living is much higher than in Kansas, but the disability check is the same amount.) My options are fewer now than they once were because of all the medical stuff in my world. I feel like a full-time, professional patient.

Stress!

I wasn’t surprised about needing one root canal. I’ve had a problematic tooth, and I was guessing this would be the answer. But, the other needed root canal, two crowns and two fillings were a big surprise. I brush and floss at least twice a day. Sometimes even a third time. Groan!

On top of this, perhaps the scariest part, from a bleeding point of view, is that I need oral surgery. This was also a huge surprise.

I have an adult tooth that never came down. It is dead and lodged in the roof of my mouth. I didn’t learn this until I was an adult, but apparently in the womb I was developing to have a cleft pallet. Things didn’t progress that far, so I was born without anything to raise a flag. But, apparently, above the roof of my mouth there is some malformation where this tooth got stuck and died. I lost the baby tooth it was supposed to replace when I was 37!

Apparently there has been some bone loss around where the dead tooth is lodged and a space has formed. The dentist can’t tell from the x-ray if the pocket has filled up with puss, or if a cyst has developed there. He thinks oral surgery will be the only solution.

So, I’m scheduling a consultation with the oral surgeon. Of course, this will likely also mean a visit with the hematologist etc. etc. etc. Then there is the issue of fragile lungs and anesthesia. Oh what fun? I am not a happy camper at all.

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About Me

I’ve kept a journal since I was about 13 years old. In it, I recorded everything around me fit for public consumption (you never know who might find a journal.) I recorded the day-to-day events of life, commentary on world events, and the rites of passage I experienced growing up. As an adult, however, life suddenly didn’t inspire entries – it got in the way of them. Once grand ambition faded into the pragmatism of trying to pay the bills. Then, in 2002, I learned I had Hermansky-Pudlak Syndrome, a rare type of albinism that causes a myriad of other health problems including a bleeding disorder, colitis and pulmonary fibrosis. At 29, I learned most people with the type of HPS I have pass away in their late 30s to early 40s. Suddenly I wanted to journal again. I wanted to leave a record of what had happened to me and what I’d learned from it. Yet writing it down has often been too painful. Here is my attempt to reconnect with my old self. I don’t want my life to be defined by HPS. I want to think about the everyday occurrences of life. At the same time, however, HPS is constantly teaching me things I want to share.